Warning: there will be foul words in this post. I don’t use them often, but this is just the final straw. Venting ahead…
As you, my friends, know, this Summer has been hell.
Things got even “hotter” yesterday with the delivery of a letter from social security – and it wasn’t the kind of letter I had been hoping for.
The craziness started in May, when my Mom moved to Houston, I subluxated my shoulder & tore it even worse, was diagnosed with adrenal exhaustion, and re-visited Tick-Borne Disease treatment with my LLMD.
Then Rhiannon’s father become very ill and passed away, and we headed to Ohio, where he lived. My body has been precariously teetering ever since. There have been issues with the will, and her father’s estate, I have to deal with.
Stress on top of stress.
My shoulder has continued down its path of self-destruction, subluxating at will, catching & tearing more, making it more & more painful. I have no choice but to have surgery now.
I have to get appointments with an orthopedic surgeon and for a repeat shoulder MRI, and would if this migraine would just let up for a little while, and the crap stop falling on my head.
That’s why I’ve been writing less & less.
It hurts. A lot.
My weight continues to drop.
My doctors are very concerned by the muscle wasting (as am I). They have done countless labs, turned up a few abnormalities, but nothing to really explain it.
My LLMD thinks it might be TBD, likely Bartonella, but she thinks I’m too weak to do IV antibiotics, and might need IV nutrition first, because of malabsorption.
Both my docs want me to get an MRI/MRCP of my abdomen/liver/pancreas, plus a transvaginal ultrasound.
They are very clear about what they are looking for. Mostly, cancer. And, a reason as to why I’m not absorbing what I eat, and why I’m having “dysfunctional uterine bleeding” (I’m getting my period every 2 weeks, and with it a 5 or 6 day hormonal migraine from hell).
As I was getting a grip on all this, suddenly, my own father became very ill and passed away. This triggered a flood of memories of growing up, deep grief, sadness, and mourning.
My body reacted badly to the stress of that.
I’ve spent all week very weak, very shaky, having adrenal dumps & in hormonal migraine.
Just when I thought that there surely couldn’t be any more shit left to be dumped on me, that we had to be due a break…
I got a letter yesterday from social security.
I had appealed my social security disability application to the highest level, the appeals council. This has been going on for FOUR years.
There is mounds of evidence.
Thousands of pages of records.
Multiple letters from three different doctors.
And one very frank, very honest, heartbreaking letter from my youngest daughter, Rhiannon.
Despite all that, they turned me down. Again.
They didn’t even review it, standing by the administrative law judge’s decision.
According to my understanding, the judge broke the rules, because there’s a special rule for people with ME/CFS. I even pointed it out to him at the start of the hearing, and put that in my appeal.
I tried to get an attorney. You have to get a really good attorney. There’s lots of lawyers out there saying they do disability, but ME/CFS is not in SS’s blue book, so you can’t just have anyone. It has to be someone really good.
When I first applied, I was forced to have the application done by an organization that “specializes” in helping people get disability, because we were, and still are, receiving food stamps & TANF. They totally fucked up the application.
So I went to the attorney after my first two denials, and she pulled my file, read through it, but said she couldn’t take the case, because it was a mess, and she wouldnt get paid if she didn’t win, and she didn’t think she could win. She used to work for social security. She knows how they operate.
So I did the hearing & appeal myself. Was denied. Again and again.
Now I have 2 choices.
1. Appeal their decision, which means take them to Court – real, true, court. Civil court, the kind before a real judge, not one employed by social security. Sue the assholes. I would assume that would take a year or two.
Or,
2. File again & start from scratch, except since they have my medical records already it won’t really be from scratch. Instead of having my start date for disability be 1/2007 it will be 3/2011.
It means filling in a new application, which is about 40 pages long, if not more, but it can now be done online. I’ve spent much of today wandering through the social security website.
The kicker here is that they have dragged the process out so long that our TANF and, most importantly, my Medicaid, are about to run out, when Rhiannon turns 18 in December. My prescriptions and monthly doctor visits are at least $2,000 to $3,000 a month.
I cannot be without health coverage.
If it’s not going to be the SSDI Medicare I had hoped for, then it’s going to have to be SSI, and if I understand this correctly, the state will give me Medicaid until I get Medicare next March, and pay the co-pays, Medicare Part D, etc, after the Medicare kicks in.
Assuming I get approved.
I have a feeling I will, though. Not only am I a lot sicker, with this very dramatic weight loss (they apparently like shit like this), but I have a lot more documentation now than when this whole damned mess started, the forms will be filled in correctly, and I know a little known secret…
…Social Security has a rule whereby if you make a declaration that you are in “dire need” of approval immediately, for financial or medical reasons, they are required to move your application to the top of the stack.
It doesn’t get much more dire than this, folks. We’d have been out on the street years ago were it not for the generosity of my mother, and if I don’t get health care coverage lined up by December 1st it’s going to be very ugly.
So I will be very, very busy, in the coming days (or weeks), filling in the damned forms and marshalling the paperwork and re-reading the social security website.
Assuming my head doesn’t explode first. It really feels like it’s about to…
Thanks for listening…
~Ash
Wolfdreams.... 
It’s hard to “like” something you hate with all your heart. I’m so sorry, Ash, that you are going through all this and now more stuff. It’s not fair and yes, I am worried about you. It sounds like you made your mind up about which option to do and it feels right to me too. As for the weight loss, have they done blood tests esp. CA-125 if they really are looking for cancer? I don’t even want to think about it because I know they will find something and they better damn cure it and fast. You are in my prayers, soul sister. Love and hugs, Laurie
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Thank you, Laurie. Yes, I’ve made my mind up – I really don’t have a choice. If I had savings and other options, i’d take them to civil court, for my sake as well as the sake of all my friends in the patient community who are or will go through the same fight.
But I don’t have that option anymore. Social security is a game, and a rigged one at that. If you don’t have a “listed” condition and meet their strict requirements of disability – ie if you’re not on your deathbed – then you will likely be denied at step one. Something like 70% of all people who apply for disability are denied on their initial application.
Step 2 is to appeal that decision. Over half will still be denied. You’re not supposed to need an attorney through this level.
Step 3 is the hearing before an administative law judge (ALJ), who works for social security, and I had to wait 16 months for my hearing. They highly recommend you have an attorney at this step. Then I waited a year for a response, and it was a denial, with many incorrect facts.
Step 4 is to appeal to the appeals council, which is what I did, submitting even more evidence, which they ignored.
The idea here is that the applicant will either a) die; b) give up; or c) recover, so they don’t have to pay up. They drag it out as long as possible for just those reasons, and now, I can’t even claim my start date for disability as the date I stopped working – 1/1/07 – and instead have to go with the date of the ALJ’s decision, which was 3/11. So if I am approved, they will not owe me “back payments” from 1/07, but only from 3/11.
But I have no choice. I can’t spend years screwing around with the court system. I have to line up medical coverage ASAP, and the only way to do that is by filing a new disability claim. I’m much sicker now. There’s much more crap documented. So I have a higher chance of approval.
They want me to say to hell with it and give up entirely, knowing the toll that filling in all those forms is going to take. They’re hoping they’ve kicked me in the teeth enough times that I’ll get discouraged and give up, or die before I can do anything more.
But I can be one stubborn bitch if you cross me, as they’re about to find out!
Mama-wolves are not to be trifled with!
Goodnite, sweetheart~~~
Ash
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I am so sad to read your post, Ash. I have a brother who got disability here in Canada and it took his getting turned down several times. I am going to be praying that things improve for you both healthwise and financially. Love and hugs, Pat.
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Ash, you deserve a gold medal for the hell you’ve been going through. I know that somewhere in the near future, you will have disability, but it just hurts me so badly to see you having to be dragged through the mud to get it! I always thought people hired an atty. & generally eventually got it. In ’92 when I got it at the age of 46, I too had to fight it for the third time, but was lucky enough to not have to hire an atty. It was so difficult fighting for my rights & having no alternatives, but to get it.
It is just so unfair that people who abuse the system get it & make it hard on those who truly do need it. So it sounds like if you have to start “over”, they won’t take the last few yrs. into acct. to pay you retroactively is what I am thinking. Unbelievable.
I am so very concerned about everything else you have going on, & I just want you to know that your perserverance, fighting will, whatever you want to name it is just truly admirable & amazing. I hope they get to the bottom of your female problems & wt. issues very soon. You have an amazing daughter to help support you emotionally, & I am so very grateful for that. I honestly don’t know how you keep your fight going feeling as you do. The human spirit is truly amazing. YOU are truly amazing!! Much love to you Ash. May things finally start becoming much easier for you soon, & that the big C word is not to be in your vocabulary. You are dealing with way too much already. Just know how much I care about you friend. Love, Dale
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Hello, dear Dale,
Thank you for all your wonderful, caring thoughts and encouragement. I appreciate them so much. Sometimes it just all gets a lot overwhelming, but when it does, I come back here and read what you and others have written, and it helps me pull myself back up, pull my big girl panties on, and get to work on fixing whatever the latest mess is.
So your words are not forgotten, they have a lasting effect on me, and I draw on them whenever I need encouragement – just wanted you to know. I know how hard it is for you right now, and am so sad that you don’t have someone there to support you the way Rhiannon does me, or even adequate medical care. I cannot imagine how you keep going, but I am thinking of you often, even if I am bad about writing back, mostly because of my shoulder & the endless crap falling on my head.
In some ways, you are lucky you got disability when you did. When the recession hit, many people who couldn’t find jobs filed for disability. It flooded the system, slowing the time it takes for a response to months or years, and raising the denial rates, especially for illnesses that cannot be proven by a good solid medical finding, but are based more on symptoms. I think they are coming to understand fibromyalgia a bit better (thanks for the info you sent – the CFS ruling I used in my case but didn’t know about the FMS one), but CFS is still too out-there for them to understand.
I will get through it, one way or the other. Thank you for listening to my rant & vent & crack a bit… I had to get that out of my system before I could get to work on the new filing.
*gentle hugs* & love
~Ash
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Hello Dear Ash,
Dear Wolf Sister, you are surrounded by your pack of humans.
I am holding the precious ivory goddess, feeling myself holding you deeply but also very sweetly with great love and compassion. I am stroking your hair and cheek as your head rests on my shoulder and tears flow down our cheeks.
I hope you will be able to find yourself in such spaces to feel the energy of great peace and comfort flowing to you periodically as you face these challenges head on, surrounded by your pack.
There is great care and nurturing but as you say Mama Wolves are not to be trifled with… I am also on-guard and snarling.
But, in this world, I feel oh so helpless in my desire to aide you, to defend you, to make the pain and the hardship go away.
So, I stand in solidarity with you and I am here for Rhiannon.
I am praying to the six directions and the elders to aid you and Rhiannon, to make things easier, to remove barriers and make each step of your journey clear.
You are sure-footed, can see in the dark and I am by your side.
Please let me know what I can do to be of greater assistance.
I give great thanksgiving that you also have Veta, Rhiannon, Beneval and all your friends in your pack. Many thanks and great appreciation to all.
I know it is difficult but I hope you will be able to continue to write, to share with us via this format.
Much love to you,
Your sister beyond time and space.
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God, Ash, I can’t believe they turned you down. I don’t say this to rub it in – I was approved the first time and within five months. Your migraines are at least as disabling, if not more, than me not being able to sit up for more than a few minutes. I half wonder if your filings had just gotten too complicated for them to really deal with, and that starting over will work better. I hope it will. My sympathies on the paperwork, too – we put off filing for years because it was so complicated, and Chimp had to do mine for me. There was no way I could have managed it with my cognitive problems.
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Yes, I think you hit the nail on the head – way toooo complicated. Because I became disabled during IV antibiotic treatment for Lyme, the folks who filed the application on my behalf but chronic Lyme as the primary diagnosis. That, of course, doesn’t exist in the medical world’s eyes. They also listed all the other diagnoses: CFS, FMS, inflammatory arthritis, hypothyroidism, etc. At the time, I wasn’t even having the migraines.
The ALJ kept asking me, my daughter, and my witness, a friend who was also an ex-employee, which affected me more, the pain or the fatigue. I think he was trying to wiggle out of having to use the ruling that says for CFS patients they MUST use the opinion of the treating physician.
They also were resistant because I was self-employed. I had a thriving internet retail business, which I had to just shutter during the IV treatment, because I couldn’t get out of bed. He made it sound like I was filing because the recession hit, so sales were down. Sales weren’t down. My ability to process sales was simply gone.
In the end he gave “controlling weight” to SS’s psychiatrist who saw me for no more than 10 minutes (might have been more like 5) who labeled me as having a somatoform disorder, and gave no weight to what my own doctors said, even tho my rheumatologist has been treating me since 1999!
He erred, and I know he erred, but there’s nothing I can do about it now. I just have to pick myself up, dust myself off, and start over. It ought to be simpler for them to understand now, and there’s not as much money at stake for them, so I suspect they’ll be more cooperative. They had better be!
My doctors are so angry about this situation, and they don’t know I’ve been turned down again… and will be asking for yet another letter from each of them.
Thanks for listening!
*hugs*
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Lovely Ash, can WE, your Friends and Sisters, DO ANYTHING FOR YOU in this situation? Write letters, call people, government, anything? There is strength in numbers and in truth. Our we could all write about our illnesses and how we KNOW how debilitating it can be…..or both? Think about it. Love, Laurie
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Oh, Ash, I second what Laurie says here. I would help if I could. I would write so if you can think of anything, anything at all that we could say that might help, sharing our stories of chronic pain and exhaustion, anything, I would help.
I am so sorry!!!
I love you and I pray that you WILL get HELP because you deserve it as a disabled citizen in our country!!!!! Gosh, it is crazy! I thought you had disability all along until a few months back. I was flabergasted to discover they had ever turned you down. Again, I am sorry Ash. I will hold hope in my heart each time I think of you!
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Ash,
I would not give up, and I would not re-file. That is exactly what Soc Sec wants you to do. In re-filing you’ll lose all the accrued benefits from the date of your original claim, and the evidence will be exactly the same, so the outcome won’t likely be any different.
You need a lawyer, and that‘s where you should put all your energy. Try to find one through a local support group or your treating physician. I don’t think you’ll stand a chance in Federal Court without one. You should have had one all along.
My case also ended up in Federal Court, and it took me over 7 years to get a dime out of Soc Sec. My lawyer ended up costing me $35K in past-due benefits, but without her I would have gotten nothing.
The Administrative Law Judge (ALJ) that you get initially is a crap shoot about which you can’t do anything. Once an ALJ denies your claim, it is an uphill battle and no one within Soc Sec is likely to reverse his decision…it’s just a dog-and-pony show to make it appear fair, and like they’re doing something, in case Congress checks. My ALJ made numerous legal errors, and his bias against CFS was actually stated in black and white in his decision, yet no one could have cared less…until, it went to the Federal Court. The Federal Judge chastised much of the ALJs decision and sent it back to him to be redone. He re-did it, making up some nonsense about “new evidence”, of which there was none, to avoid any admission that he was dead wrong all along.
Of course it cost the ALJ, who was 100% in the wrong, nothing…while it cost me 7 years without a penny of income, and $35K of the benefits that I was entitled to. The system is grossly unfair and mismanaged, but sick people are left to fight the system, while the general public could care less, or considers anyone not paralyzed from the neck down to be a “welfare cheat”.
If you can find a sympathetic lawyer there is nothing to be lost by continuing the battle into Federal Court…if you start over you’re likely to end up right back where you are 3-4 years from now. I’m so sorry for what you’re going through.
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Jerry,
Thank you for you detailed comment. I’m sorry you went through this hell, too.
Is it possible to do both, to re-file *and* to take them to federal court over the original filing?
In my case, there *is* new evidence that wasn’t available at the ALJ hearing, and I’m considerably more ill than I was at the hearing, and when I originally filed.
I don’t think I have another 3 years for this to play out in federal court, being realistic. I would like to think so, but my weight is periously low, and instinct and common sense tells me I don’t.
It is more important to me to have the health coverage than the back disability payments.
Its about simple survival now.
Thank you again for sharing your story. It is so very awful that we have to go through all this while so very ill.
Take care.
~Ash
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Sending you my sincerer sympathy, and a whole world of hope! I wonder if you could apply in another state, such as NC? Or, have you checked with the nearest University? Perhaps they have a Center for Social Justice? We have one here, and my son and I have started working with an outreach organization of the Center at UNC-Chapel Hill. They’ve done more for us in a short time (a few weeks) than any team of psychiatric workers did in over five years.
Sometimes the Universities can be a source of knowledge, and you never know, there may be a doctoral student or a professor who focuses on disability issues.
I just can’t believe it Ash. I really can’t. Our country has gone to shit in some ways. It is not the America I was raised in, that’s for sure.
Blessings to you and your family.
Love, your friend, Michelle.
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Ash, I know I’m very late in commenting on this post, but I just wanted to tell you how sorry I am. That has got to be SO stressful. I wish I had some advice or something helpful to say.
Wishing you the best in figuring out the best way forward.
Take care,
Patrick
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I am a new reader here. I live in Australia and our Social Security is just the same. You know you are at the end of your tether, yet unless you have a meltdown in the middle of their office, they won’t know that. You see, SS likes it when you are a gibbering mess – they are better at responding to acute crisis, and it is amazing how quickly the red-tape vanishes when you give them the satisfaction of ‘baring your throat’.
You have to get dumb….like a fox, Ash.
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“When different places within us are in pain, we should extend the care of deep friendship towards them. We should not leave them isolated under siege in pain. When a part of your body is ill, it must be a lonely experience for it. If we integrate its experience and embrace it in the circle of recognition and care, it alters the presence of the illness and pain”. p.249-250, “Eternal Echoes” John O’Donohue, 1998.
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